Siblings
We advocate open and honest communication between family members and advise parents/carers to talk to siblings about what is going on as soon as possible. Children and young people (CYP) have a far greater capacity to deal with the truth than is often realised – and many children and young people do not associate negative emotions with the word cancer. Children and young people will know that something is amiss as soon as the adults around the sibling, friend or classmate are aware of the cancer diagnosis and the truth can often be less worrying than their imagination.
It is much better if they hear the correct medical terminology, with age-appropriate explanations, as soon as possible, with an opportunity to ask questions, rather than overhear adults talking, feel excluded and misinterpret the facts. Siblings and friends who can read and who visit the ward will see words like cancer and chemotherapy all around the units. There are resources to help parents/carers talk to siblings (see below) and unit staff may also offer to help. Siblings need to understand why everything has suddenly changed and often admit they feel as if the illness is their fault. They should be constantly reassured that this is not the case, even if they are not vocalising that fear. It is important to reassure siblings that it is nobody’s fault and that they will not be the next one to take ill.
It is helpful to advise parents/carers to be very factual, for example:
- “Joe has something wrong with his blood and it is called leukaemia. He needs to stay in the hospital for a while to have medicine to make the leukaemia go away.”
- “I need to sleep at the hospital with Joe and dad is going to sleep at home with you. I am not sure how many sleeps but I will tell you as soon as I know.”
- “You can still go to school – Tom’s mum is going to collect you and I will see you as often as I can.”
A younger child could be given something belonging to the parent/carer to 'keep safe' – to feel they have a bit of the absent parent/carer with them.
CCLG resources for helping brothers and sisters
'Ben's stem cell transplant' booklet
CLIC Sargent information on how brothers and sisters might feel
'My brother and me' by Sarah Courtauld (available on Amazon)
Friends and classmates
With the child or young person’s permission, we advocate speaking to friends and classmates about the patient’s diagnosis and treatment; again using the correct, medical terminology with age-appropriate explanations. It is preferable that they hear this news from an adult in a supportive open environment with the opportunity to ask the questions they will have, rather than have unanswered questions. Open discussion will enable friends and classmates to be prepared for any physical changes there may be in the child or young person, such as hair loss, and also assist them in supporting their friend or classmate. Without open discussion, misconceptions may cause them to be fearful or judgmental, or display challenging behaviour towards the child or young person who is ill.
Friends report not knowing what to say, or worry that they could catch cancer. Children and young people will be understandably anxious and curious as to why their classmate’s hair has fallen out, their appearance has changed and why they need to repeatedly return to hospital. The Paediatric Oncology Outreach Nurse Specialists (POONS) can assist teachers in this task and there are many resources available. The Teenage Cancer Trust (TCT) also has a schools information programme in UK.
If children and young people have known someone who has died of cancer it may be useful to explain that “cancer” is just a word in the same way that “school” is a word – but just as there are many different types of schools, nursery school, primary school, secondary school, etc and that all schools are different, it is like that with cancer – there are lots of different types of cancers and that children and young people’s cancers are quite different to adult ones and are often easier to cure.
Some examples of common questions and possible answers:
Why did they get ill?
- We do not know exactly why people get cancer, but we do know you cannot catch it and that it is not their fault, or anyone else’s fault, that they got ill.
Why have they lost their hair?
- The medicine that they are given to get rid of the cancer is called chemotherapy and it causes the hair to fall out (children sometimes think you have cancer of the hair).
Why have they got that tube?
- If it is a central venous line (in the chest) – the line is used to take blood and give medicines.
- If it is a naso-gastric tube (a tube that passes through the nose to the stomach). This tube is used as the treatment sometimes makes it difficult to eat and drink enough and there are many medicines to take. Food, drink and medicines can be given through the tube directly into the stomach / tummy.
Will (s)he die?
- Cancer is a serious illness but the treatment is very good and we hope it will make them better.
Link: Talking to children about dying: note, in the vast majority of cases the treatment they will be having is with curative intent.
CLIC Sargent cancer and school life pack
'I have a friend who has cancer' A small leaflet for school friends with helpful things the friend would like them to know
Welcome back! A guide for teachers
How Freyja helped her friend through her cancer treatment - video
Bereavement resources
Information and resouces for talking to children about death and dying